Friday, August 21, 2009

What's in your attic?


I just read a great Blog written by a neuro nurse who has ALS. One of her topics was, "What's in My Attic?" This is an excerpt:

"Hmm, what is in this box? Oh!! No, don't look! Here, give me the tape. This one is stuff that is not for anyone else to see. No, I don't have any deep, dark secrets! It's just stuff I don't want to have to explain. I don't have much privacy in my life now, so I am keeping my past to myself. I don't mean just physical privacy. It is an invasion of privacy to have to have someone else dress you, help you to the bathroom, and all that, but it isn't so much what people see as what they know. I can't hide a stash of chocolate, try smoking pot, spend money, buy a present, try a new hairdo, read a book, change my clothes, or put a tape in the VCR without somebody knowing. 99% of the time it is no big deal, but I would like to be able to read "Final Exit" without anyone knowing, re-watch the Beatles Anthology without my family wondering if I have crossed that thin line between fan and pathetic nutcase, and toss out a whole stack of misprinted pages from the computer without anyone knowing I screwed up! There, it is sealed shut. Just label it "Privacy."

Well, enough of this. Stashed away up in this attic is my identity, all my tomorrows, my control over my own home, my freedom to make choices and come and go as I please and when I please, my ideas of the marriage and kind of love I hoped to have, and my privacy. All lost to ALS. Someone in the ALS group once remarked that the ongoing nature of the losses is what makes ALS so hard to deal with. It isn't like an auto accident where you come out paralyzed. That is a huge loss to adapt to, but people do adapt and go on with their lives. With ALS you no more than adapt to the loss of one function when you find you are losing yet another. Losing the physical ability is only the tip of the iceberg. You lose so much more. The attic gets more and more crowded.

Thanks for listening,"

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